The intensity of the California heat felt jarring to our Washingtonian weather sensibilities and sunburned noses as we stood in line at California Adventure. There were Mickey ears and Disney shirts as far as the eye could see and horror-movie-quality screams kept floating through the air from the direction of Tower of Terror. But I wouldn’t have been able to scream if I’d wanted.
My throat was feeling restricted, as if a man had wrapped a giant, strong hand around my neck and was beginning to squeeze. Choking, suffocating. The clock was ticking, and every second counted. If we didn’t act quickly I could go into anaphylactic shock; if we didn’t act quickly … I could die.
My soon-to-be husband knelt by the bench I was sitting on as if he was proposing, but instead of a ring he was wielding an Epi-Pen. He called 911 and we waited anxiously knowing that if the epinephrine wore off before the medics arrived that the reaction would return in full force.
But soon the medics were running through the park. Soon I was lying in a bed at the ER, where I stayed until midnight.
I hadn’t noticed it until it was too late, but a woman next to me in line had opened a jar of peanut butter because her little kids wanted a snack. I hadn’t seen it, so I hadn’t had time to get away.
This is what life with anaphylaxis can look like. Everything is going along, business as usual, and the next moment someone’s jabbing you with an Epi-Pen and the medics are taking you on an exclusive ride, minus all the Disney characters, in the direction of the nearest hospital.
Even though I have an officially recognized disability, it’s invisible. So I look perfectly normal. But my life is defined by something people can’t automatically spot the first time they meet me the way they’d notice a wheelchair or a seeing-eye dog. But that doesn’t mean it’s any less present.
Like other disabilities, mine impacts, restricts, and defines every day of my life from choosing a new purse based solely on its Epi-Pen carrying potential to avoiding visits to most movie theaters and coffee shops because of the peanut-y treats that are served; from insuring my phone’s battery never gets too low so I always have the ability to call the medics should I need them to the very awkward introductions that go along with making a new acquaintance: “Hello. My name is Kelsey and if you eat peanuts next to me you could kill me. If I ever go into anaphylactic shock, if you could please use my Epi-Pen and call 911 immediately I’d really appreciate it. It’s so nice to meet you.”
After developing anaphylaxis after graduating from high school, there’s been a lot of grief, frustration, anger, and loss that have been a part of coming to terms of what living with a life-threatening invisible disability means. And for me gratitude — not some overly-perky silver lining kind of thing but the acknowledgement that there are still things to be thankful for — is what more than anything helps to pull me out of bouts of depression and enables me to enjoy my life even though it’s not what I planned.
I used to think of thanksgiving as a “but.” For example, “I live with a life-threatening disability … but I have a family who loves me so it’s okay!” But I’m learning that, at least for me, gratitude isn’t a “but.” It’s really more of an “and.” Gratitude doesn’t negate problems or make things magically all better. Instead, it helps keep things in perspective: I live with a life-threatening disability and I have a very supportive family.
I hate having to ask for help with things like grocery shopping. And when peanuts are in season I can’t set foot in several of the stores in town. It makes me feel so much less independent and less like an adult. However, I’m also grateful for my husband and mom who are both willing to help out as much as needed when I can’t take care of something, myself. I feel frustrated that I’m less independent and I’m also thankful I have support.
I can feel depressed or even angry that I have to deal with this, while also feeling grateful that I live in an age when there are life-saving inventions like Epi-Pens. I’m thankful for my doctor who helps me brainstorm about how to do things like go on vacation as safely as possible.
I feel so isolated from the world at large sometimes. And I’m also thankful for blogging because it gives me a community. I can interact with people all over the world; I can make friends and share life without ever having to worry about what someone next to us might be eating. For me, this is huge.
It can be challenging for me to make new face-to-face friends. And I’m also so very thankful for the ones I have. I’m thankful for the friends who have learned how to use my Epi-Pen so they’ll be prepared for an emergency. I’m thankful for the ones who are willing to be flexible about where we hang out or de-peanut their houses so that I can visit. I’m thankful for my friend Stephanie who just recently got married because she ensured that not a single thing on the menu has peanuts because she wanted me to be able to come. It’s harder for me to meet people because so many things center around food and I’m also blessed with some extremely supportive people in my life.
I feel upset with my grandpa who uninvited me from family Thanksgivings and Christmases at his house because he likes to feed the squirrels peanuts. He keeps a very large bag of peanuts next to the dining room table, and was afraid the squirrels wouldn’t enjoy something else so I was uninvited. And I’m also thankful for my in-laws. They made their house completely peanut-free so that I can stop by anytime I want without having to call first to see if they’ve had anything with peanuts that day. I’m thankful that they’ve made sure every holiday dish is Kelsey-safe. I’m hurt by how my grandpa has handled my anaphylaxis and I’m grateful for my in-laws.
I feel grief and loss over my career dreams. During an interview my first questions would be, “Where do people eat? Is it possible for me to completely avoid where they eat? Does anyone ever bring peanut butter cookies to work? What about candy? PB and Js?” The hubby and I realized that a usual 9 am to 5 pm gig wasn’t safe for me. And there’s still grief associated with that loss. And I’m also so thankful that my husband’s top priority is keeping me safe, so he’s fine with us being a one-income family or me working from home even though that means we’ll have to be more frugal.
It’s so easy to feel overwhelmed, angry, and heartbroken; it’s hard to be grateful. But choosing to see the people and things in my life that make my life fuller, more beautiful, safer, and happier helps me to live. Thanksgiving isn’t a magic formula that makes everything perfect or happy or easy, but being grateful helps me to focus on the good and to keep a more balanced view of my own life. Thanksgiving doesn’t negate the negative but it helps me to not lose sight of the fact that there are some positive ands in there, too.
So as I sit at the Thanksgiving table this year — unable to go to my grandma’s house but safe and welcomed by my in-laws — thankfulness will help me to see the complexities, the multifacetedness, of my own life; the pain and the beauty; the ands.
Life is hard sometimes and it’s also beautiful.